Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

Abstract

Objective The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. Methods An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. Results All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for “intervention characteristics,” (2) Six themes for “process,” (3) three themes for “inner setting,” and (4) four themes for “outer setting.” For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development (“intervention characteristics”). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes (“process”); and fostering a positive implementation climate (“inner setting”). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access (“outer setting”). Conclusion Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

Diversified caregiver input to upgrade the Young Children’s Participation and Environment Measure for equitable pediatric re/habilitation practice

“…To best include these data in the goal setting process, EI practitioners proposed that the YC-PEM be administered prior to a child’s upcoming evaluation of progress, and that both practitioners and families access summary reports [ 30 ]. In related work, EI caregivers and providers have piloted a program-specific decision-support tool for integrating YC-PEM results to guide service plan development [ 40 ].…”

“…The fifth inclusion criterion is based on known social disparities in pediatric re/habilitation access and use among racially and ethnically diverse families (e.g., BNH children enrolled in EI have 75% lower odds of receiving physical therapy services and receive one hour less of EI services per month, as compared to White, non-Hispanic peers) and socially disadvantaged families (e.g., publicly insured children had less intensive EI therapies; [ 38 , 39 ]). This inclusion criterion also responds to historically low representation of BNH families (0.8–6.5%) and socially disadvantaged families (10.4–20.9%) in prior YC-PEM development, validation, and health services and implementation research inclusive of EI families [ 8 , 28 , 30 , 31 , 40 ].…”

Caregiver strategies supporting community participation among children and youth with or at risk for disabilities: a mixed-methods study

“…Prior mixed-methods studies have advanced knowledge of participation disparities ( 12 ), guided the design of participation-focused re/habilitation interventions ( 13 , 14 ), and identified their implementation parameters ( 15 ). To our knowledge, this is the first mixed-methods study to examine the specific role of caregiver strategies for supporting community participation among transition-aged children and youth with disabilities and those at risk ( 16 ).…”